The Hummingbird House community is growing every day. It includes families, as well as passionate supporters, donors, and advocates.
Here are some of their stories.
Sophie was a beautiful, perfect, bright eyed little girl born to parents Peta and Brett, and big brother Jake. When she was just a couple days old she showed signs that something wasn’t right. It was at 3 weeks old that Sophie was diagnosed with a life-limiting condition.
Peta recalls that at the time of her diagnosis, “we didn’t know what we needed or what would help. We were utterly lost. Where would we go for help?” It was suggested they consider Hummingbird House.
Peta shares that “Sophie’s little life would have been so different without Hummingbird House. We would have missed out on so many special memories.”
Tamika is a fun-loving twelve year old who has been coming to Hummingbird House for a few years. Tamika is often joined by her brother Bryson who is six years old, and loves to be outdoors. Tamika and Bryson have four other siblings, and live with their mum Virginia and dad Chris in Toowoomba.
Being able to come to Hummingbird House and stay as a family is something Virginia really loves. “It’s about being able to be the parent and not the carer. Sometimes it’s not just the younger three kids, it’s all six. We get to relax, unwind, and enjoy family time together.”
Archie was a little fighter, who was determined to follow his own path. He was born with Chronic Neonatal Lung Disease and Interstitial Lung Disease, and later confirmed Alveolar Growth Simplification. His loving mum Jenna says “we were lucky enough to be able to spend 5.5 months getting to know our little superhero.”
Archie’s mum and dad were unfamiliar with what Hummingbird House offered. “We clicked on the website and knew immediately that it was the most perfect place for Archie’s end of life care. Going there meant that Archie was able to spend some time outside of the hospital walls, away from the beeps, alarms, medical equipment and bright lights.”
Liam is a brave, sweet 2 and a half year old, who loves cuddles. He is the much loved son of Michelle and Ashley, and big brother to twins Aidan and Cameron. When he was three weeks old, Liam was diagnosed with epileptic encephalopathy, and is not able to do anything independently.
Some of the Cage family’s favourite parts about coming to Hummingbird House are “having everything taken care of – not having to worry about cooking or cleaning. We also enjoy the music sessions, the art classes and hydrotherapy.”
Florence is a beautiful baby girl who is always happy and full of wonderment. She is Leo’s little sister and the daughter of Ellie and Brett who live in Gladstone.
Florence was born with a rare neurological disorder which paralyses all the muscles surrounding her mouth and throat, and arthrogryposis.
Because the family lives regionally, sadly in-home care and support is not readily available. “This can often feel very isolating. Hummingbird House is the only place we can go for a break and time out, all together as a family.”
Zoey is a very cheeky seven-year old girl who loves ABBA, Pig the Pug books and going to school. According to her mum, she has the “most beautiful eyes and longest eyelashes you’ve ever seen. She loves cuddles and is always happiest when someone curls up with her for a nap.” Zoey has a life-limiting condition that means she is unable to sit, use her hands purposefully, talk or eat and she suffers from chronic chest infections and uncontrolled seizures.
Zoey’s favourite part of Hummingbird House is probably the pool.
As far as Megan Firster and her family knew, their baby boy was a healthy baby. “There were no indications otherwise”, says Megan. “He was just an incredibly relaxed and ‘chill’ little boy”.
When he was a few weeks old, he was admitted to the hospital with feeding issues. It was then that they realised there was more going on. Leo was always developmentally delayed, however it was when he was 9 months old, that he really started to regress.
“How do you put it into words what it means to come to Hummingbird House?” Mason Haevecker’s mum Renee thought for a moment and then responded: “the break. The kids can be themselves. Mason is 24/7. We can all just breathe out and get a break.”
Mason’s condition is as a result of a cardiac arrest after his second operation to repair a heart defect.
When asked what’s their favourite thing about coming to Hummingbird House, Kyran Dunlop’s mum Carissa laughs and says “there’s too many! We get time out as a family. Kyran’s sisters love it here. It’s like being on holidays. We get time together without having to remember when medications are due, and Kyran is really happy to be here.”
Kyran has a rare disease which results in progressive damage to his nervous system. This means that he often has his eyes closed.
How do you explain why it’s important to be able to switch off and just be mum? How do you correct people who assume your daughter is sleeping? These are the questions Charli Flannery-McRae’s mum Louise regularly deals with. It is through friendships made at Hummingbird House that Louise is finding the answers.
“Hummingbird House is our home away from home. In fact, Teddy (Charli’s brother) wants to live here…”
Imagine realising that your newborn boy’s bones are so soft, they break; and that his lungs are not fully developed. This is the reality for the McHugh family with their son Abel. His body doesn’t create the enzyme needed to make strong bones. He is kept alive because of a trial drug that seems to be working for him.
Abel is a charming, happy little boy who loves cars and music. “Well, anything with wheels, really. Wheels and music”, laughs his mum, Makeesha.
Whenever Mick is asked about his ‘feisty’ daughter, Natasja, his love and admiration for her is obvious. “She is much loved. By everyone who knows her. She can be feisty when she wants be, she certainly knows how to tell people off”, laughs Mick. “She is a wonderful soul, very content, happy little girl, who brings a lot of joy to the whole world.”
Natasja has a condition that means her life is limited, but “she works around that”, says Mick.
Mikaela is self-described ‘free-spirit’, and started visiting Hummingbird House just after the service opened in 2016. Mikalea’s muscles don’t work properly, which means that she is not as independent as she would like to be. She enjoys playing Habbo as she can get online and interact with the gaming community. She also loves lasagne, which is almost always on the menu when she stays at Hummingbird House.
Coming to Hummingbird House means “being able to get away from everything. I can just relax, be more independent, and have the freedom I want to mature”, says Mikalea.
When it came time for Brad and Mel Cooper to say goodbye to their adored 2 year old son Cody, they knew they wanted him to receive care at the end of his life at Hummingbird House. Cody was born prematurely, with hydrocephalus, spastic quadriplegia and an inoperable brain cyst.
He showed himself to be more engaged with his surroundings than first thought. Mel spoke of her quiet amusement when people underestimated her “cheeky little man”. “He could move situations to suit himself. He was very clever like that.”
Madelyn is a very cheeky 4 year old little girl with the best personality. She’s basically non verbal with a few words and some key signs, but has a talent for getting her message across in her own way. All with the most infectious smile and giggle.
Madelyn brings immense joy to her mum Melissa, dad Marcus, siblings Mason, Alexander, Keira, Riley,Lachlan, Samuel, and all who know her through her laughter, uncomplicated love and rich glimpses into a different reality. “She has, and always will dance to the beat of her own drum”, says Melissa.
Maddy’s quirks have taught her family to re-evaluate what is important in life.
Rory is a bright, happy boy who had a stroke when he was in the womb. This, coupled with some infections, means that his brain has been badly effected. He has seizures and other very complex health problems.
Kaitlin speaks with much love about her happy, smiley boy who just loves coming to Hummingbird House, because it is a place where he ‘feels safe and has fun’.
“I think the word palliative is thrown around too much. It’s always associated with death. Our main priority and that of Hummingbird House is about life, and helping us, Rory’s family, to give him the best life we can.”
A premature labour, a rural location and health complications meant that her newborn son Khy was whisked away from her before she had a chance to hold him. Hospital staff said he would pass away within hours. Khy held on for eleven days.
“You go into a hospital with all your hopes and dreams, and your life can change in an instant.”
The Waddell’s journey is one that is shared by thousands of families in Queensland.
“When you receive the diagnosis, all normality and certainty in your life is gone. We want to give Tommy the best quality of life possible, and be the parents he deserves, but it’s hard.”
Rachel Clune was worried that she wasn’t wealthy enough, or influential enough to make a real contribution to building Hummingbird House. “I thought ‘What could I possibly do? I’m not Bill Gates or Oprah Winfrey, I’m just an ordinary Australian.”
As it turns out, everyday Australians can do quite a lot. Rachel inspired the Coles $2 token campaign, which to date has raised over $800,000 for Hummingbird House.
Rebecca Bell-Fuller spent the last six months of her pregnancy with her daughter in a state of fear, doubt and uncertainty after scans indicated a serious brain abnormality.
Grateful her daughter was born happy and healthy Rebecca has fostered a mini-community of runners of all fitness levels who come together to raise awareness and funds to support Hummingbird House.
Mark and Fiona Engwirda are one of thousands of Queensland families who have loved and lost a child to a life-limiting condition. They understand why Queensland needs Hummingbird House.
“We were in a hospice in New South Wales when we kissed Kate, told her we loved her, and said goodbye. We had travelled over 1,000 kilometres to that hospice, because there was nowhere for us to go in Queensland. Hummingbird House has changed that.”
Hummingbird House’s construction team from Woollam Constructions, led by site managers Jason and Wade, became everyday heroes when they turned their talents to fundraising to purchase vital equipment for Hummingbird House.
“This job wasn’t like others we’d done before,” explains Jason. “A lot of the guys in the team are dads. Every day that we were on site, we were reminded of all the children who really need Hummingbird House.”